Download Print nbmt_stemcell_2006.qxd - National Bone Marrow Transplant

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Including Bone Marrow,
Peripheral Blood, and Cord Blood.
Friends
Helping Friends Friends Helping Friends
This booklet is dedicated to the amazing spirit of patients challenged
by a stem cell transplant in their determination to get well.
The mission of the National Bone Marrow Transplant Link (nbmtLINK)
is to help patients, as well as their caregivers, families and the health care
community, meet the many challenges of stem cell transplant by
providing vital information and support services.
Founded in 1992, the nbmtLINK is an independent, non-profit organization funded
entirely through the generosity of individuals, corporations and foundations. Taxdeductible contributions are welcomed and vital to ongoing programs and services.
The information in this guide should not be construed as medical advice.
Please consult with your physician regarding your medical decisions and
treatment. The listed resources are not intended to be endorsements.
For additional copies of this booklet, please contact:
National Bone Marrow Transplant Link
20411 W. 12 Mile Rd., Suite 108
Southfield, MI 48076
Phone: 248-358-1886
Toll Free: 800-LINK-BMT (800-546-5268)
Fax: 248-358-1889
[email protected]
www.nbmtlink.org
Copyright 1990, Revised 1996, 2001, 2006
We gratefully acknowledge the following for their financial support:
Sustaining Partners
American Society for Blood
and Marrow Transplantation
M.D. Anderson Cancer Center
William G. and Myrtle E. Hess
Charitable Trust
Henry Ford Transplant Institute
The J.P. McCarthy Foundation
University of Michigan
Comprehensive Cancer Center
Fred Hutchinson Cancer Research Center
UW Medicine
Children’s Hospital and Regional Medical Center
Memorial Sloan-Kettering Cancer Center
Supporting Partners
Hackensack University Medical Center
Siteman Cancer Center, Barnes Jewish Hospital,
Washington University School of Medicine
Indiana Blood & Marrow Transplantation
University Medical Center/Arizona Cancer Center
DeRoy Testamentary Fund
Dana-Farber Cancer Institute
Barbara Ann Karmanos Cancer Institute
The Jacob and Valeria Langeloth Foundation
National Marrow Donor Program
Oregon Health & Science University
David Wortman Memorial Fund
St. Joseph’s Healthcare
Sponsoring Partners
The Leukemia & Lymphoma Society
Protein Design Labs
Roswell Park Alliance Foundation
Shands at University of Florida Bone
Marrow Transplant Program
Tepnel Lifecodes – “The Lab That Cares”
Winship Cancer Institute
of Emory University
The National Bone Marrow Transplant Link (nbmtLINK) would like to acknowledge the
transplant survivors who generously shared their experiences
and recommendations, and the other individuals who reviewed and edited
sections of this guide’s earlier editions.
The nbmtLINK would also like to acknowledge the editors, reviewers, and nbmtLINK
staff who helped update this fourth edition of the Resource Guide:
Editor
Kristen Jones
National Bone Marrow Transplant Link
Managing Editor
Myra Jacobs, MA
National Bone Marrow Transplant Link
Medical Reviewer
Patricia Steele, RN, BSN, CHTC
University of Michigan Comprehensive Cancer Center
Reviewers
Muneer Hyder Abidi, MD
Barbara Ann Karmanos Cancer
Institute, Wayne State University
Tamara Arnow, MJS
Medicare Rights Foundation
Kari Bailey, MBC
National Marrow Donor Program
Ann Breen, RN, MN, OCN
Fred Hutchinson Cancer Research
Center-Seattle Cancer Care Alliance
Katy Fasl, MSW, CHES
National Bone Marrow Transplant Link
Melanie Goldish
SuperSibs!
Marie-Ann Halladay
National Bone Marrow Transplant Link
Sandra A. Mitchell, CRNP, MScN, AOCN
National Institutes of Health, National
Cancer Institute
Michelle Burda, MLS
University of Pittsburgh Medical Center
Melodee Nugent, MA
Center for International Blood and
Marrow Research
Jill Van Buskirk, AMLS
National Bone Marrow Transplant Link
Sandra K. Ring, MS, CCLS
SuperSibs!
Sarah Christensen, MA
Mayo Clinic Cancer Center
Tiffany Rowe
National Bone Marrow Transplant Link
Jill Dowdy, MLIS
Mayo Clinic Cancer Center
Carolyn Vannucci
National Foundation for Transplants
Friends Helping Friends
History ................................................................................................................................................1
Introduction ......................................................................................................................................1
Understanding the Process ..............................................................................................................4
Autologous Transplants ............................................................................................................5
Allogeneic Transplants ............................................................................................................5
The Donor ................................................................................................................................6
Bone Marrow Stem Cell Transplant ........................................................................................7
Peripheral Blood Stem Cell Transplant..................................................................................8
Cord Blood Transplant..............................................................................................................8
Transplant Variations................................................................................................................9
Non-myeloablative Transplants ......................................................................................9
Tandem Transplants ........................................................................................................9
T-Lymphocyte Depletion ................................................................................................10
Donor Lymphocyte Infusion (DLI)................................................................................10
Second Transplants ........................................................................................................10
Clinical Trials ..........................................................................................................................11
Preparations for the Transplant ....................................................................................................11
The Transplant ................................................................................................................................13
Pediatric Transplants......................................................................................................................14
Emotional Considerations ..............................................................................................................15
The Role of the Caregiver ..............................................................................................................16
Selecting a Caregiver ......................................................................................................................18
Costs ................................................................................................................................................18
Insurance ........................................................................................................................................19
Medicare and Medicaid ..........................................................................................................21
Financial Aid....................................................................................................................................21
Conclusion........................................................................................................................................22
Glossary ............................................................................................................................................24
Resource Listing ............................................................................................................................27
Stem Cell Transplant Information and Support ..................................................................27
Stem Cell Donor Information ..............................................................................................27
Cancer Information and Support ..........................................................................................28
Caregiving Support..................................................................................................................29
Children’s Programs and Services ........................................................................................30
Fertility ....................................................................................................................................31
Financial Assistance, Fundraising & Insurance..................................................................32
Disease-Related Information ................................................................................................33
Transportation ........................................................................................................................34
Information on the Internet ..................................................................................................35
Books ................................................................................................................................................38
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So your body has betrayed you,
But it’s gonna work out fine.
The angels gather round
And throw you down a line.
Don't despair.
Don't give in.
You will feel the rain on your face again.
Someday,
You will feel the rain on your face again.
–Stewart Francke, 2001, nbmtLINK Video:
The New Normal: Life After Bone Marrow/Stem Cell Transplant
www.nbmtlink.org
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–––––––––––––––––––––––––––– History and Introduction –––––––––––––––––––––––––––
History
one Marrow/Stem Cell Transplant Resource Guide, Friends Helping
Friends was first published in 1990. Much has changed in the world of stem
cell transplant (SCT) since the publication of the original Resource Guide. This
is a rapidly evolving field and some of the information published in this book
might already be dated. Your health care team is the best source of current
medical information.
B
Over a decade ago, there was an unmet need for information and support
regarding stem cell transplant. Because of this, a dedicated group of SCT
survivors, family members, friends, and health professionals responded by
writing the Bone Marrow Transplant Resource Guide, Friends Helping Friends.
The booklet was very well received and has since been distributed to more than
50,000 people worldwide, and to countless others via the Internet.
The overwhelming response to this publication led to the creation of the
National Bone Marrow Transplant Link (nbmtLINK) in 1992. The nbmtLINK’s
outreach to patients and families continues to be dynamic, but the focus remains
steadfast: to help patients, as well as their caregivers, families, and the health
care community, meet the many challenges of stem cell transplant by providing
vital information and support services.
We know that medical technology will continue to change the nature of stem
cell transplant. Much has been learned. Much is yet to be discovered. We
encourage you to use this booklet as a guide to enhance the recommendations of
your physician and health care team. It is not a substitute for medical advice or
an endorsement for a particular procedure. It is meant to clarify the subject of
stem cell transplant, including bone marrow, peripheral blood, and cord blood
transplants, for you. We hope that it will be helpful.
Introduction
he ABCs of BMT! BMT, PBSCT, HSCT, bone marrow transplant, stem cell
transplant, peripheral blood stem cell transplant, blood cell transplant….so
many words and letters it looks like alphabet soup….do they all mean the same
thing?
T
In the area of stem cell transplantation there has been a lack of worldwide
scientific agreement on a single terminology. An understanding of the history
of this treatment method offers some explanation about why so many different
terms are used. Direct collection from the bone marrow was the first source of
hematopoietic stem cells (the cells capable of producing red cells, white cells
and platelets), hence the treatment was initially called a bone marrow
transplant or BMT. The discovery of hematopoietic stem cells in the peripheral
circulation similar to those harvested from the bone marrow led to the term
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“peripheral blood stem cell transplant” (or PBSCT). Currently, the peripheral
blood is the major source of stem cells rather than bone marrow, and so a more
general term of “hematopoietic stem cell transplant” (HSCT) has been adopted
to include situations in which the stem cells may be collected from the
peripheral blood, directly from the bone marrow, or even from the placenta
(cord blood transplant).
For an autologous transplant, first the stem cells are collected from the
patient; then the patient is given high dose chemotherapy. After the high dose
chemotherapy, the patient is given back his/her own stem cells. However, the use
of the term ‘transplant’ for this procedure has also led to confusion. An
autologous transplant is not really a transplant; it is actually just a reinfusion of
the person’s own stem cells.
When talking about a stem cell transplant one must consider both the source
of the stem cells (from the patient, from a related donor, from an unrelated
donor), and the way in which the cells are collected (from the peripheral blood,
from the bone marrow space directly, or from the placenta after delivery). Using
the latest research, the health care team will make a recommendation about
which stem cell source and which method of collection is most appropriate to
the medical needs of the patient.
Throughout this publication, we will be using the term “stem cell transplant”
and its abbreviation SCT, which includes bone marrow, peripheral blood, and
cord blood transplant, related or unrelated.
Physicians always caution against using the term “miracle” in connection with
stem cell transplant. It is, as they remind us, a modern medical procedure
involving some risk. It comes with no guarantee. However, few would deny that
there has been tremendous progress in the field. Examples include:
• The acceptance by most insurance companies that SCT is a standard rather
than experimental treatment for a number of diseases. The result has been an
increase in the number of insured patients.
• The list of diseases and conditions with treatment potential from SCT has
steadily increased. Once considered a “last resort” for leukemia, SCT is now
successful for a number of illnesses and performed earlier in the course of the
disease.
• Thanks in part to media coverage of transplant patients and their stories, stem
cell transplant has received greater awareness and acceptance. Due to this
exposure donor registries throughout the world have increased their number of
volunteers. However, increasing the number of donors on the registries is still a
critical concern for minorities who identify themselves as Black or African
Americans, American Indians or Alaska Natives, Asians, Hawaiian or Other
Pacific Islanders, Hispanic or Latino, or mixed race individuals.
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–––––––––––––––––––––––––––– History and Introduction –––––––––––––––––––––––––––
• The maximum age at which patients are considered for SCT has increased
due to advances in the SCT field. The use of reduced intensity
chemotherapy/radiation and medical supportive care allows older patients to
better tolerate treatment. This type of transplant is referred to as a nonmyeloablative SCT.
• In addition, patients who do not have a genetically-matched sibling or an
unrelated donor available can benefit from a treatment approach utilizing
cord blood from unrelated donors as a source for stem cells. Cord blood
transplants were only offered to children in the past; however, recently
conducted clinical trials have demonstrated the feasibility of using cord blood
transplants as an option for adults.
• The post-transplant prognosis for patients has dramatically improved. This is
due, in part, to better medical supportive care, including treatments for
transplant-related side effects, such as graft-versus-host disease (GVHD) and
infection. Moreover, the average hospitalization time for transplant has been
substantially shortened.
• The development of new drugs, such as STI 571, also known as Gleevec, may
make it possible for individuals with chronic myelogenous leukemia to avoid
undergoing a transplant altogether. At the time of this writing, Gleevec is
being tested to determine its effectiveness in treating a number of different
diseases.
Despite all these reassuring and remarkable strides, the idea of a stem cell
transplant is still overwhelming and understandably provokes anxiety for
patients and their family members. SCT is a life-altering experience that
requires a long-term commitment and is recommended for life-threatening
conditions.
What you’ll find in these pages will help you understand and deal with the
challenges of stem cell transplant. We have also addressed other important
issues, such as insurance, finances, and preparing your family for the transplant.
Information has been compiled by health professionals, survivors, and dedicated
volunteers. Many have been where you are right now, trying to make sense of
what lies ahead. We feel that this booklet will make transplant an easier
experience for you and your family. We hope that if you have a clear overview of
what your transplant entails, you’ll feel more in control and, with advanced
planning, less overwhelmed.
Medical science has made great progress in the field of stem cell transplant.
The vast majority of transplants treat diseases such as leukemia, lymphoma,
multiple myeloma, and some solid tumor cancers. Today, people with immune
deficiency disorders, sickle cell, or aplastic anemia may also benefit from
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transplant. In some individual cases, autoimmune disorders, such as multiple
sclerosis, systemic lupus, and scleroderma are also being treated through
transplant. So, while this procedure is not a simple solution, it does offer
promise.
Understanding the Process
one marrow is the spongy tissue found in the cavities of the body’s bones
where all of the blood cells are produced. Every type of blood cell in the
marrow begins its life as a stem cell. A stem cell is often defined as a “parent
cell” which divides and forms the different cells that make up the blood and
immune system. Stem cells are found in the bone marrow, in cord blood, and,
in smaller numbers, in the circulating (peripheral) blood. Stem cells produce:
B
• White cells (leukocytes) that fight infection
• Red cells (erythrocytes) that carry oxygen
• Platelets that are clotting agents
Without bone marrow and the disease-fighting blood cells it produces, your
immune system would be severely impaired. There would be little defense
against even the most common infections.
The goal of a stem cell transplant is to cure many different types of cancer and
disease. The type of transplant you have will depend on who donates the stem cells.
• Autologous transplant—The patient donates his/her own stem cells prior to
treatment for reinfusion later.
• Allogeneic related transplant—The person donating the stem cells is a
genetically-matched family member (usually a brother or sister).
• Allogeneic unrelated transplant—The person donating the stem cells is not
related to the patient.
• Syngeneic transplant—The person donating the stem cells is an identical
twin.
Stem cells can be collected from the following sources:
• bone marrow
• peripheral blood
• cord blood
Many elements of your transplant are beyond your personal control. It may be a
good time to shift your focus to those factors that can be controlled or influenced
by you. You should begin to investigate what resources you will have available to
you before, during, and after transplant. It is important that you educate yourself
about the transplant procedure.
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Autologous Transplants
When patients give their own stem cells back to themselves, the procedure is
called an autologous stem cell transplant. How can a sick person be his/her own
donor and then get healthy again? It helps to think of this kind of transplant as a
rescue. You may even hear your health care team refer to your transplant as a
rescue. The autologous transplant isn’t necessarily performed because there’s
something wrong with the bone marrow or stem cell production. It’s performed
because the dosage of chemotherapy and radiation needed to kill the disease is so
high that it will destroy the patient’s existing bone marrow. Without the stem cells
in the marrow, there is no blood cell production or immune system, and life is not
sustainable. The patient’s own stem cells, collected prior to the chemotherapy/
radiation, are reinfused, like a blood transfusion, and blood cell production and
the immune system are re-established. Generally, patients not achieving
remission are not suitable candidates to donate stem cells for themselves.
Oddly enough, however, cancers that originate in the bone marrow, such as
certain types of leukemia, are sometimes treated with autologous stem cell
transplants, particularly if it is not possible to use the stem cells of a donor.
Since the marrow is where the cancer originates, it is difficult to obtain totally
unaffected stem cells. Even when the patient is in remission, it’s possible for
some cancer cells to remain in the body. In order to deal with this, many
transplant centers have developed methods of purging or cleansing the stem cell
product and ridding it of most of the cancerous cells. The goal is to keep the
diseased cells in such a small number that the body’s defense system will be able
to destroy them. Purging is done differently from center to center. Some centers,
in fact, don’t do it at all. If you have questions about these issues, ask them. Your
doctor and other medical professionals should be able to get you the information
that you need.
Allogeneic Transplants
Related and unrelated allogeneic, and syngeneic transplants are most
commonly used in persons with diseases affecting bone marrow, such as
leukemia, aplastic anemia, and some lymphomas. The idea is to replace
unhealthy marrow with healthy marrow. Sometimes a disease, such as leukemia,
interferes with the stem cell growth, causing cells to stop developing and/or
become defective. Eventually these abnormal or immature cells enter the
bloodstream causing serious illness. A stem cell transplant provides healthy stem
cells to patients whose marrow is diseased. The transplant is actually the
transfer of healthy stem cells from a donor to a recipient.
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The Donor
Autologous SCT patients will receive their own bone marrow or blood stem
cells that were retrieved before transplant. In this case, the patient is his/her
own donor.
Allogeneic SCT patients must have a donor identified for them in order to
receive new stem cells. The choice of donor and source of stem cells will be
determined by your physician. You should understand the rationale for choosing
a particular donor and source of stem cells. Often a donor is a brother, sister, or
another family member. Each sibling offers a 25% chance of being a match.
Having an identical twin sets you up for a perfectly matched syngeneic
transplant.
When there’s no related donor match for you, a search is initiated to locate a
“matched unrelated donor” (MUD). How are unrelated matches found? There are
a number of donor and cord blood registries worldwide. The National Marrow
Donor Program is one of the largest computerized registries and keeps an
extensive database of potential donors and cord blood units. The chance of
finding an unrelated donor from the general population depends on the
uniqueness of your tissue type. Genetic and ethnic background may also affect
the likelihood of finding a donor. With the availability of more accurate
laboratory tests, the ability to identify closely matched donors is improving.
Knowing who should and should not be tested as a donor is often a topic of
concern. Friends, coworkers and others interested in becoming a stem cell donor
may either contact a local donor center or one of the large registries like the
National Marrow Donor Program (see Resource Listing). These organizations will
be aware of when and where donor drives are occurring. The general criteria for
becoming a donor include factors such as general health status, weight, and age.
Those who will generally not be able to serve as a stem cell donor include people
with a history of severe heart problems, cancer, hepatitis, insulin dependent
diabetes, or HIV. Cord blood units undergo a similar screening process. Donors
are screened for conditions that would put them at too great a risk to donate as
well as for illnesses that could be harmful to the patient.
Your transplant center contacts the registries to begin a preliminary donor
search. There is no cost for a preliminary search. Charges for a formal search
vary, so check with your insurance company to find out what coverage is offered
regarding donor searches. If you have questions about any part of the donor
search process, speak to your doctor or transplant coordinator. Don’t be in the
dark about the status of your search.
Two factors are important in locating a match. The first is a test known as HLA
(human leukocyte antigen) typing. The antigen is a substance, acting like a
marker, unique to you, not unlike a set of fingerprints. A simple blood test is all it
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takes to begin the process of HLA typing. Most HLA typing today is performed
using a DNA based method to match patients and donors. DNA testing allows
patients and donors to be more closely matched. The goal is to find a match for
at least six key antigens. The ability to identify donors is improving and some
transplant centers are trying to match even more antigens.
The second factor in finding a matched unrelated donor may be the amount of
representation of your ethnic or racial group in the registries. Because these
antigen/tissue types are inherited, and some are unique to racial or ethnic
backgrounds, the greatest chance of locating a donor may come from the same
group. A lack of donors in your ethnic or racial group may make it more difficult
to locate a match. Ambitious efforts to increase the number of minority donors
on the registries are underway.
You do not have to have the same blood type as your donor to be a suitable
match. If blood types are different, the patient will become the donor’s blood
type after the transplant. This is because the stem cells from a donor have been
“programmed” to produce the donor’s blood type and will continue to do that in
their new environment.
A cord blood transplant may be a possibility if you meet specific criteria. The
use of cord blood is based on the size of the unit as the number of stem cells
required is based on the patient’s weight. Some transplant centers are
conducting research to combine multiple cord units for transplant in order to
provide the necessary number of stem cells.
It is important to remember that it takes time to carry out a donor search. Your
transplant center manages the search and will inform you of the results. If you’ve
been told there are potential unrelated donor matches for you, more time is
required to identify the best matched donor. A formal search begins to narrow
down candidates and generally takes several weeks or months (a cord blood
search usually takes less time). If a donor is located, willing, and eligible, then
final evaluation begins. If no suitable matches are found, other strategies need to
be discussed with your doctor.
Bone Marrow Stem Cell Transplant
Stem cells are collected from the patient’s or donor’s bone marrow. Historically,
this has been the “traditional” transplant and requires general anesthesia in an
operating room. Stem cells are collected from the hip bone. When stem cells are
collected from the bone marrow, a large needle is inserted into the back of the
hipbone and marrow is withdrawn. The hip bones in the pelvis are marrow-rich
bones. Since this procedure is performed under anesthesia, the donor doesn’t
feel anything during the marrow collection but may experience some discomfort
in the back area for a few days afterward. About 5–10% of the donor’s marrow is
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withdrawn, an amount that the body easily replenishes within just a few weeks.
This process is known as bone marrow retrieval (sometimes referred to as a
“harvest”) and is done in an outpatient surgery center.
Peripheral Blood Stem Cell Transplant
When stem cells are taken from the circulating blood, the procedure is more
like a blood donation. The stem cells in the circulating blood are called
peripheral blood stem cells (PBSC). Like the stem cells in the bone marrow, they
are able to divide and produce red cells, white cells and platelets. The
concentration of peripheral blood stem cells in the blood, however, is very low. In
order to collect them, medications known as colony stimulating factors or growth
factors are given to the donor to stimulate the bone marrow to produce more
stem cells, which are then released into the blood stream. The growth factors are
administered as injections under the skin daily for a maximum of five days
duration. Once they are in the blood, these stem cells are collected in one or
more sessions normally taking four to six hours each. Stem cell collections are
performed as outpatient procedures. Donors should plan to spend most of the
day in the hospital on the day of collection. In this procedure, which is called
apheresis, the blood circulates through a machine called a cell separator that
removes the peripheral stem cells and returns the rest of the blood to the body.
The stem cells are then stored and frozen until the time of the transplant for
autologous bone marrow transplants. If the stem cells are collected from a
related or unrelated donor, they are given immediately.
Cord Blood Transplant
Since the first cord blood transplant (CBT) in 1988, tremendous strides have
been made in this field. Generally, CBT is not offered as a treatment option
outside of clinical trials. It is mainly offered to children or young adults who
meet the criteria for enrollment in these clinical trials. However, recently
conducted research trials have demonstrated suitability of cord blood
transplants in a selected group of adult patients. Since the number of stem cells
required for transplant are based on body weight, most CBT’s are used with
patients weighing less than 90 pounds. To overcome this limitation, some
transplant centers are conducting clinical trials in which two different cord
blood units are combined. There are far-reaching applications for the use of
umbilical cord blood stem cells for transplant. The advantages are many. It can
be frozen, stored, and readily available. Cord blood also poses a lower risk of
graft-versus-host disease (GVHD) and when GVHD does occur, it seems to be
milder.
Umbilical cord blood is a rich source of stem cells. The umbilical cord stem
cells, instead of being discarded, may be removed from the placenta and
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attached umbilical cord after delivery of a baby. This procedure poses no danger
to the mother or child’s health. The cord blood unit can then be frozen and
stored for future transplant. Arrangements for the collection of the cord blood
unit must be made several months prior to the expected date of delivery. Unless
there is an existing reason to save a cord blood unit for a family member, the
current medical recommendation advises against long-term cord blood storage.
However, some hospitals allow parents the opportunity to donate their child’s
umbilical cord blood to an unrelated donor registry. Interested parents should
speak with their doctor about this option. Improved coordination of the cord
blood registries and increased cord blood unit donation will help in identifying
suitable cord blood products. CBT may be particularly valuable in meeting the
desperate need for stem cell donors in minority groups. Readers are advised to
discuss the most recent recommendations for CBT or cord blood donation with
their physician to keep up with the latest findings.
Transplant Variations
Like other medical science fields, as more is learned about various diseases,
new strategies are considered. Stem cell transplant holds great promise. The
number of people who benefit from transplant continues to grow. Some
remarkable techniques and newer trends in stem cell transplant include:
Non-myeloablative Transplants
One treatment option is the non-myeloablative transplant, sometimes referred
to as a “mini” or reduced intensity transplant. The non-myeloablative transplant
utilizes lower doses of chemotherapy and radiation. The donor’s cells and
patient’s cells “co-exist” in the body for a while and work together to fight cancer
cells. Non-myeloablative transplants often require a matched donor. In some
cases a mismatched donor may be used. This procedure is a promising option for
older patients or those who might not be able to tolerate full dose treatment.
People who do not have cancer, but rather an inherited immune blood disorder
or an immunodeficiency, may also benefit from this treatment. Strategies are
being evaluated, and researchers are “cautiously optimistic” about the nonmyeloablative transplant option. Because data are not yet complete, it is too
early to offer long-term success rates.
Tandem Transplants
These are specifically timed autologous transplants designed to prevent the
disease from returning at a later time. Enough stem cells are collected (prior to
first transplant) to rescue the patient after two sessions of high dose
chemotherapy/radiation.
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T-Lymphocyte Depletion
In some cases, the stem cells that are collected undergo a process known as Tlymphocyte depletion. In this process, T-lymphocytes, a type of white blood cell,
are removed from the stem cells before they are given to the patient. This is
done to reduce the incidence of graft-versus-host disease (GVHD), which is
caused by the new immune system attacking healthy cells in the patient because
it does not recognize the patient as “self.” Removing the T-lymphocytes makes it
less likely that the new immune system will mount an attack against the patient.
However, T-lymphocytes are also beneficial as they help the donated stem cells
take hold or engraft, and they play a role in reducing the risk of relapse.
Although T-lymphocytes pose a risk to the patient because they attack healthy
cells — as in GVHD — they also attack residual cancer cells in a process known
as graft versus leukemia effect, thus reducing the risk of relapse.
Donor Lymphocyte Infusion (DLI)
This presents a new strategy for managing relapse after SCT for patients with
hematological malignancies such as CML, AML or ALL. The patient does not
require chemotherapy or radiation prior to this therapy. DLI is associated with
significant risk due to graft-versus-host disease and low white blood cell count
that increases the patient’s susceptibility for infection and bleeding.
In the future, DNA technology (gene testing) will lead to a better
understanding of what triggers malignancies in the body’s cells, and high doses
of chemotherapy may be replaced with new treatment options.
Second Transplants
A second transplant may be recommended if a disease returns following
transplant or if the donor’s cells do not engraft. The type of treatment and source
of cells will depend on the circumstances. This generally poses increased risk as
the patient has already had extremely high doses of chemotherapy/radiation or a
prolonged period of being immune compromised. In some cases, following an
autologous stem cell transplant, a second transplant using donor cells may prove
beneficial for treating relapsed disease.
Your doctor will discuss with you what type of transplant and what source of
stem cells is best for you. Many factors determine the type of transplant
including the disease being treated, previous treatments, age, general health,
donor availability, and method of stem cell collection. It will be up to you and
your doctor to decide how the transplant is handled. Whatever method is used
for the stem cell collection, the desired outcome is the same—that the retrieved
stem cells will flourish in the recipient.
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Clinical Trials
Part of making an informed decision about having a stem cell transplant
involves learning about clinical trials, which test new approaches, new drugs,
and new protocols. These are long-term research studies that evaluate promising
treatments for cancer and other diseases treatable by stem cell transplants.
Transplant-related side-effects and complications are also being studied. Clinical
research studies are conducted in several forms. These include national studies
sponsored by the National Institutes of Health, single institution studies, and
cooperative studies between institutions.
Clinical research studies validate new treatment in three phases. Phase I
research studies establish optimal dosage. In phase II research, safety and
effectiveness are carefully defined. Phase III studies compare and contrast a new
treatment with standard treatment. In this phase, patients who participate are
randomly assigned to receive one treatment or the other.
The potential benefits of participation in a clinical trial include:
• Specialized care and strict adherence to protocols
• Careful monitoring during treatment and close follow-up afterward
• Being among the first to benefit from new treatments
• Treatment expenses may be lessened
The potential drawbacks of participation may include:
• Unknown side effects
• May not be right for you
• Insurance coverage may be inadequate
Ask your doctor or medical center to locate where clinical research studies are
being conducted. One source for a listing of independent clinical trials is the
Physician’s Data Query (PDQ). It is a computer database focusing on cancer
treatment information. To find out about these studies, contact the National
Cancer Institute (see Resource Listing).
Preparations for the Transplant
nce the decision has been made to have a stem cell transplant, lots of
preparation is needed. On an emotional level, preparing for a transplant may
entail spending time with friends and family or taking time out to be alone to
experience one’s feelings about the transplant. On a physical level, this may
mean eating a healthful diet, getting good dental care, and maintaining an
exercise routine. On a practical level, it may mean choosing a transplant center,
organizing caregiving arrangements and obtaining items for a hospital stay.
O
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As indicated, selecting a transplant center will be a big decision. Talk to your
doctor and check with the insurance company to learn about your options.
Family factors may influence your choice of centers. Foremost, choose a center
that has a good amount of experience with your type of disease and in
performing transplants. Do your research and ask questions. If possible, visit the
medical center before your transplant.
There are distinct advantages to having the transplant at an experienced
medical center with an excellent track record. If, however, there is no center
near your home, you have concerns about the center’s reported outcomes, or the
center has performed too few of the kind of transplant you need, then the choice
may be more difficult. Calling the National Marrow Donor Program (NMDP) to
get a listing of centers performing unrelated stem cell transplants is an excellent
way to get initial information. The NMDP Transplant Center Access Directory
contains phone numbers and addresses of most transplant centers with
information about the number and type of transplants performed at each center
as well as some statistics about survival rates at each center. Additionally, BMT
InfoNet offers a comprehensive listing of transplant centers on its website (see
Resource Listing).
Other important considerations may include insurance coverage, proximity to
family, follow-up care, and living arrangements should you select a center away
from home. Signing on to stem cell transplant bulletin boards or newsgroups on
the Internet can be another useful way to get information. It may be helpful to
get personal accounts and recommendations, but beware that this can also
result in “misinformation.” Your health care team should be relied upon for the
most accurate medical advice.
Help get yourself and your family prepared to meet the transplant challenge.
Put together a notebook or binder to record information from your doctor visits
and/or take a tape recorder along with you. Take a family member or friend with
you during discussions with your medical team. They’ll provide backup support in
understanding what was said. Don’t hesitate to voice concerns.
Aside from the physical examinations and testing that you’ll undergo, family
and “support team” readiness is very important. Planning and discussions
between hospital staff and family will be helpful. Questions about finances,
employment, delegating responsibilities, and more should be addressed within a
family setting. Prepare children (as patients themselves or as children of
patients) to cope with the transplant. This is done through education and simple
(not scary) discussions about the procedure. Frequently offer children a chance
to ask questions about the transplant. Request age-appropriate material from
your health care team to help children understand. Attend information or
educational sessions at the transplant center to learn about what you can expect
before and after transplant.
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The Transplant
tem cell transplants are different from other transplants. There’s no surgery
for the patient on the day of the procedure. Stem cells are infused
intravenously. This occurs in the patient’s hospital room. Many patients and their
families, in fact, find the actual day of the procedure to be somewhat
anticlimactic. Some of your transplant’s biggest challenges may actually occur in
the days leading up to the big event when you receive your chemotherapy and/or
radiation.
S
Just prior to the transplant, you’ll receive high doses of chemotherapy and/or
radiation, referred to as a “conditioning regimen” to destroy diseased cells in the
body. The chemotherapy and/or radiation will also destroy the stem cells in your
marrow, severely weakening the immune system. Until the new cells take over,
you’ll be susceptible to infection. Every precaution should be taken to guard
against bacterial, viral, and fungal infections. As the stem cells that have been
transplanted begin to produce white blood cells, the risk of infection declines. The
term “immune compromised” refers to your immune system when it is functioning
at less than 100% due to the effects of chemotherapy and/or radiation. This
compromised state varies from patient to patient and may last from six months to
a year or more after the transplant.
Receiving chemotherapy and radiation is an important part of the treatment and
during this time you will be carefully monitored. You can help your medical team
during this period by letting them know if you experience anything unusual, and
are feeling pain or other symptoms. Be a good communicator. Conversations with
your health care team are particularly important at this time.
On the day of transplant, you’ll receive the stem cells that were taken from either
you or a donor through an IV (intravenous) just like any blood product or medication.
It takes one to two hours for the infusion. In an amazing process, stem cells will travel
through the bloodstream and migrate to the marrow space in the bone. They know
exactly where to go. The stem cells from the transplant should begin producing lifesustaining blood cells in about two to four weeks. When peripheral blood stem cells or
cord blood stem cells are used, this generally occurs somewhat more quickly. You will
be monitored frequently for any reaction to the infusion, but in most cases the
process is uneventful. While unlikely, it is possible that your body will not allow the
stem cells to grow. This is referred to as graft rejection or graft failure, which is a
serious complication requiring additional treatment.
It is only natural to wonder about other problems that can arise. Some
complications that may occur in the weeks following your transplant are:
• Infection (from immune system deficiency)
• Hemorrhage (from lack of platelets)
• Organ damage (from chemotherapy and/or radiation)
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In allogeneic transplants, when the cells of the new marrow are from a related
or unrelated donor, you may also have complications from graft-versus-host
disease (GVHD). This condition occurs when the new stem cells perceive your
body as foreign and attack the tissues and/or organs of your body. (“Graft” refers
to the donated stem cells and “host” is the patient). This response occurs
because, despite the best efforts to have a match, there are some genetic
differences between you and your donor. GVHD may compromise the ability of
tissues and/or organs to work properly, and it increases the risk of infection. The
areas most often affected are the skin, liver, and gastrointestinal tract. GVHD
may present itself in either an acute form (within a few months after the
transplant) or in a chronic form (up to several months later). This is not
uncommon. Severity of GVHD may vary from mild cases of a temporary nature to
more serious problems that, in the extreme, can become life threatening. GVHD
is managed through a variety of immune suppressing medications that can be
administered to control acute and chronic graft-versus-host disease for an
extended duration of time.
Although no one would look forward to getting GVHD, a mild acute case may
actually be good. It will cause an immune response against any foreign tissue,
including any cancer cells in the body that have not been destroyed by
chemotherapy, radiation, or the patient’s own immune system. This is why, in
some patients, an allogeneic transplant is preferred over an autologous or
syngeneic transplant. If patients do not develop GVHD, then their
immunosuppressant medication is tapered off in the six months after transplant.
Pediatric Transplants
lthough the technical transplant process may be similar, children and
teenagers having a stem cell transplant have particular needs and different
concerns than adults. Vital to all areas of transplant is communication. Children
need to receive information that is appropriate to their age and stage of
development. Teaching children about their disease and treatment, in words they
can understand, helps them cope. Protecting them from information may worsen
the situation because they may imagine things to be much worse than they really
are. Listen to their questions and answer with reassurance and honesty. Allow
your child to express emotions and help him/her to keep a positive attitude.
A
One area of concern in children undergoing stem cell transplant is growth and
development. The physical effects of treatment and environmental restrictions
after transplant may impact their growth and cognitive or emotional development.
A challenge for parents and medical personnel is to promote the normal aspects of
the child’s life. Many hospitals have programs providing recreational and
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educational opportunities as well as emotional support. This helps children deal
with illness and may promote their well-being.
The siblings of children who undergo a stem cell transplant are also a group to
be concerned about. Siblings may experience feelings of jealousy or anger about
the extra time and attention given to the ill child. The best way to help these
children deal with their feelings is to provide honest, age-appropriate information
about the patient’s condition and treatment. It may be helpful to have siblings visit
the clinic or hospital in order to help them understand what the sick child is
experiencing. Many times a child’s imagination is filled with incorrect information.
Siblings need special attention, support, and many opportunities to talk about
their feelings and fears in order to best cope with the impact and concern of
having a brother or sister with cancer.
Some wonderful resources are the pediatric social worker or child life specialist
at your treatment center. These professionals have special training in ageappropriate communication with children and in family dynamics. SuperSibs! is an
organization that can provide additional information (see Resource Listing).
Emotional Considerations
ertainly emotions may be heightened at this time. Undergoing SCT may be an
anxiety-provoking experience. It requires much from the patient, his/her
family and friends, both physically and emotionally. Virtually everyone
experiences some degree of apprehension and fear throughout the process. It is
common to feel alternating emotions such as worry, hope, anger, excitement,
fear, or even self-pity. Learning about the anticipated course during
hospitalization and possible complications can certainly cause anxiety for
patients and their relatives, but knowing this information is extremely
important. Most transplant centers provide handouts or other resource materials
about possible transplant complications. Patients and their families are strongly
encouraged to review this information prior to transplant. As frightening as it
may seem, knowledge brings with it power and a sense of control.
C
Patients and their caregivers should consider ways of coping that they find
helpful. Asking for help to get through this experience is normal and appropriate.
If you feel that your level of stress is overwhelming, discuss this immediately with
your physician. All patients will be seen by a social worker prior to transplant.
Professional help can positively impact your emotional well-being and will directly
and indirectly impact your overall treatment experience. Although there are many
different ways of coping, you might find the following suggestions helpful:
• Acknowledge your feelings. It is unrealistic to expect yourself to be positive
all the time. Be honest about how you feel, and then begin to plan out first
steps in coping with your difficult situation.
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• Make time for activities that will make you feel emotionally stronger. It is
okay to want a greater connection to your loved ones and yet at other times,
feel the need to be alone.
• Support from others may be a key factor in predicting how well a person will
cope with a difficult treatment. Asking others to help may actually reduce a
sense of helplessness. Look into all possible resources for help. Let people
know exactly what they can do to help you. Talk about your specific needs.
Create a list of tasks and designate responsibilities to others if possible.
• It is important to have multiple caregivers in order to avoid stress and
exhaustion among caregivers. Patients have frequent follow-up appointments
in clinics after they are discharged from the hospital. Frequency of these
appointments can vary among patients and depends on the level of care
required. Patients are not able to drive on their own for several weeks and
require a reliable means of transportation.
• Focus on the issues that bring meaning to your life—your religion,
spirituality, interests, or passions.
• Use your strengths. Capitalize on the positive coping skills that have worked
for you in the past. Perhaps it was physical exercise, taking a walk, speaking
to friends, or spending time on a favorite hobby. If you are feeling
overwhelmed, seek help from a mental health professional or support group.
• Remind friends that your family may need extra support too. Encourage
others to offer help to your family.
Often patients and families facing a transplant appreciate being “linked” to a
stem cell transplant peer support volunteer. This is someone who has had a
transplant and is willing to share his/her personal experience. By listening to
someone else’s story and their practical suggestions, you can often better
prepare for your own journey. The National Bone Marrow Transplant Link and
other organizations have established services that create this match-up whether
by phone, e-mail, or written correspondence. It is helpful for caregivers as well to
talk to others in similar circumstances. This peer to peer support may be an
important complement to medical care (see Resource Listing).
The Role of the Caregiver
uring the transplant process, you will need at least one family member or a
friend who can provide you with emotional and physical support. This person
is often referred to as a caregiver. In many cases, it will only be possible for you
to have one caregiver with you during the week. If this is the case, you may
consider arranging alternate caregiver support during weekends so that the
caregiving task does not fall on just one person. Ideally, however, you may be able
to arrange to have more than one caregiver as the role can be very demanding.
D
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Even though many people successfully make it through the transplant with only
one caregiver, having two or more caregivers is an advantage. This allows each
caregiver a time to rest and return to the hospital more refreshed. Since
caregivers may experience a high degree of anxiety, sharing the responsibility of
caring for you can serve to alleviate some of the tension. Finally, having more
than one caregiver provides a safeguard in the event that a caregiver gets sick
and is unable to be on the transplant unit.
Your caregivers are very actively involved during the pre-transplant and posttransplant process. Their responsibility after discharge from the hospital
significantly increases as they are required to alter their lifestyle and needs to
assist you. It is important that caregivers are provided emotional support and
monitored for signs of distress and fatigue. The role of a caregiver may include:1
• Providing emotional support
• Providing physical care during and after hospitalization
• Caring for the central line (catheter)
• Helping with administration of oral medications
• Recording the medications taken
• Giving intravenous fluids and medications using a pump device
• Identifying changes in the patient’s condition
• Obtaining medical care if needed
• Reporting symptoms to health care staff
• Gathering information
• Keeping family members and friends up-to-date about the patient’s condition
• Monitoring the number of visitors
• Maintaining a clean home environment after hospitalization
• Preparing food
• Providing transportation to and from the hospital for follow-up care
Knowing that your caregiver is well prepared for his/her responsibilities may
give you greater confidence. Organizations exist that support caregiver needs,
and it may be worth the time to contact these groups. Sharing unique concerns
with other caregivers and receiving mutual support can help. Check if caregiver
discussion groups are offered at the transplant center. This is a good place to
voice concerns and get practical suggestions about caregiver responsibilities.
Caregivers won’t want to burden the patient with additional problems, and these
groups may provide needed support for them (see Resource Listing).
1
“Patient and Caregiver Manual,” Fred Hutchinson Cancer Research Center Transplant Program
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Selecting a Caregiver
he most important consideration in selecting a caregiver is to make sure that
your primary caregiver is someone you feel comfortable with and is someone
who cares deeply for you. Other things you may wish to consider include whether
or not the caregiver will feel comfortable in a hospital environment. Most SCT
units have workshops to train caregivers in necessary skills and are also able to
provide additional help with certain tasks for those who need it.
T
Costs
nderstandably, the prospect of a transplant is stressful enough without
worrying about finances too. But, the reality is that transplants are costly.
Aside from medical costs, there may be additional out-of-pocket expenses. The
financial burden on a family may become difficult if advanced planning is
neglected. If you can anticipate expenses, you may plan for how they will be met.
A preliminary list of expenses, other than those covered by insurance, might
include:
U
• Lodging for follow-up care
• Follow-up office visits
• Home care, house cleaning following transplant
• Childcare
• Prescriptions
• Transportation and parking
• Telephone costs
• Over-the-counter medications and related supplies
If your transplant requires that you must search for a related or unrelated
donor, expect to incur the following kinds of expenses:
• Donor search fees: A preliminary search of donor and cord blood registries is
done free of charge by your doctor or SCT coordinator. Charges will begin
when donors or cord blood units are tested. Two donor/cord blood unit
registries in the U.S. are the National Marrow Donor Program (NMDP) and
the Caitlin Raymond International Registry. Several other registries also exist
(see Resource Listing).
• Your transplant center will assist you in determining if your insurance will
cover the testing of donors. If you don’t have this coverage, you’ll be told of
your financial responsibility. It may range from $10,000 to $25,000.
• Compatibility testing: Once a potential donor is identified, additional testing
will be performed. Prices for these tests vary. Some centers require advance
payment to cover these compatibility tests. Frequently more than one test is
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done. Unused portions of this initial fee are typically refunded or transferred
to another of your patient accounts. These fees may or may not be reimbursed
by insurance or government agencies.
• Donor typing of family and friends: There is a fee for each test done. This is
due to the cost of lab work. Siblings are tested first and then other family
members may wish to be tested. Insurance companies will generally cover
testing of siblings, parents and children but not additional family members.
Stem cell harvest and donor expenses: The cost of the actual collection of cells
from the donor, his/her medical tests, and possible travel expenses may be high.
Usually there is a fixed fee for the collection and delivery of stem cells. The
average rate is about $3,500–$5,000 if it’s a related donor. The average rate for an
unrelated donor is $15,000–$50,000. Donors are not paid for any part of their stem
cell donation. All of their medical and traveling expenses are covered by the
patient’s insurance so that there are no costs to the donor.
The actual transplant: The procedure is expensive. Insurance companies vary
widely on coverage. It is possible that much of your transplant, if not the entire
cost, will be covered. Call your insurer to check on your coverage or have your
transplant center make the contact. If your insurer refuses to cover expenses, be
persistent and consider speaking with legal counsel or someone with expertise in
the insurance field (see Resource Listing).
Post-transplant: It’s difficult to predict your expenses after the transplant. Much
will depend on your recovery time, which may range from six months to a year.
Your insurance company will probably cover testing and may also cover follow-up
visits. However, there are many out-of-pocket expenses. Medications can be very
costly, especially if you do not have prescription coverage. Ask about your
coverage prior to transplant.
Costs may vary depending on your treatment center. Although the center may
not be able to quote you an exact dollar amount for your transplant, do request a
general estimate for what you can expect to pay. This is especially important if
your insurance coverage is limited.
In general, transplant costs have declined over the years. This is due, in part, to
the increased use of outpatient care. The rise in the number of autologous stem
cell transplants, where donor expenses may be eliminated, is another cost
reduction factor. An autologous transplant may range from $50,000 to $100,000
depending on the circumstances. An allogeneic transplant may range from
$150,000 to $200,000 (see Insurance).
Insurance
heck your insurance coverage early. The transplant center will start the
insurance approval process by sending your health insurer a letter
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requesting pre-approval of your treatment. The insurance company may request
a complete history of your physical condition, a copy of the treatment protocol,
the hospital’s informed consent document, your laboratory and x-ray results, and
your physician’s recorded treatment recommendation. Make certain that these
materials are sent out promptly, if requested.
Get a copy of your insurance policy if you don’t have one. If you are insured
through work, your employer is required to provide you with a copy of your policy.
Review it carefully to determine what is covered and what is excluded. If you are
uncertain about your coverage, ask your medical provider or insurance
representative to explain it. You will want to determine if donor searches and cost
for collection of cells are covered. Sometimes it is not specifically stated in a
policy. Clinical trials may or may not be covered by insurance. It is important to
check with the insurance company prior to entering a clinical trial.
If your insurance company rejects coverage of the stem cell procedure, ask for a
written explanation. Find out how to appeal this denial. Whether there is an
appeal process or not, ask your doctor or hospital to formally request coverage
again. Many times, an insurer will reverse its position, especially if there is a
second reviewer or if you are undergoing this treatment as part of an approved
clinical trial. Be sure to comply with the time requirements. Ask for the appeal in
writing and send it certified mail, with return receipt requested. See if your
doctor will supply medical information that supports the treatment and include it
with the appeal.
If there is notice of an appeal, and you cannot get a quick reversal, continue to
follow the appeal process. At this point, your doctor and transplant center should
also be providing the insurer with scientific support information and include a
listing of other institutions now providing this procedure. Be persistent. The
“paper trail” between your transplant center and your health insurer may become
very important if coverage is denied. Organize your own paper trail file.
If your health insurance is paid through your employer, ask if they can and will
make efforts to help. Sometimes the employer may pay for treatment rather than
work with the insurer. At other times, the employer can put pressure on the
insurer, particularly if the employer spends a lot on health benefit coverage.
At some point, it may be advisable to consult an attorney. The attorney will
require information to determine if the insurer is being discriminating in its
policies. It is possible in some areas that laws protecting disabled persons may
apply. The definition of who is disabled or handicapped could cover the patient in
some cases. Should you require the help of an attorney, consult one who
specializes in insurance denials.
Individuals at insurance companies generally want to assist you. Case managers,
for example, can be very helpful to patients. Often medical directors, who are
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physicians, make the decisions about what would be the best care. Approaching
them as people who want to help is the best way to begin.
There are also government agencies, at the federal level, such as the Equal
Employment Opportunity Commission, and at the state level, such as the
Commission on Human Rights, which are designed to help the average citizen.
These agencies are “user-friendly,” which means that you can personally go to the
agency and speak to an investigator about your problem. Sometimes they might
even be willing to file suit for you.
Medicare and Medicaid
If you are a Medicare or Medicaid patient, contact the treatment center’s social
worker or patient financial services to discuss your options. They will work with
you to understand what coverage is offered. If you are rejected coverage, ask to be
informed of your appeal rights. You have the right to appeal the denial of a service
that is medically necessary. If you have Medicare, make sure the transplant is
conducted in a Medicare-friendly facility. Call 800-MEDICARE if you have
questions about your coverage, or contact the Medicare Rights Center (see
Resource Listing).
Financial Aid
here are some places you can turn to for help with transplant expenses.
While there are no agencies or organizations that will absorb the full cost of
a transplant, some relief is possible. Ask a social worker at your treatment center
for the names of those that you might contact. Check with nonprofit
organizations affiliated with your disease. Make applications for reimbursement
for mileage, lodging and even some prescriptions (see Resource Listing).
T
If the transplant is for a minor child, contact your state department of health.
Many states have Children’s Health Care Services, which provide substantial
financial aid or insurance coverage, regardless of your income. Sometimes
monthly supplemental payments might be required from you.
If insurance coverage is minimal for your transplant, you may need to raise
funds to help pay for your treatment. It is important to begin fundraising efforts
early. There are several nonprofit organizations that specialize in helping
patients raise funds (see Resource Listing). These organizations help arrange
fundraisers and maintain accounts to which tax-deductible contributions can be
made on a patient’s behalf. Another benefit of working with such groups is that
they may provide encouragement and emotional support. Also, check with civic,
service, or religious groups for help.
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Some considerations for successful grassroots fundraising include:
• Be well organized. Appoint a leader and committee who will oversee a project
and take responsibility for getting it accomplished. The patient should not
serve as chairperson of his/her own fundraising campaign.
• Have a dedicated group of volunteers.
• Keep volunteers motivated.
• Inform donors how money is directed.
• Have a variety of fundraising projects.
• Publicize your efforts in the community.
If you are going to fundraise, estimate how much money you will need. First, be
sure that none of these costs will be covered by insurance. Are you eligible for
medical assistance programs? Have you discussed getting help from your
employer? Form a volunteer group to manage fundraising projects. Information
on fundraising can be found at the public library, from your transplant social
worker, or from an organization like those found in the Resource Listing.
Conclusion
here will be a number of issues, medical and non-medical, following your
stem cell transplant that you and your family may address. These may
include concerns about caregiving, the transition home, employment, sexuality,
nutrition, fatigue, possible setbacks and others. The National Bone Marrow
Transplant Link provides the following resources that address these concerns in
detail and offer many practical suggestions: The Survivors’ Guide to Bone
Marrow Transplant, What to Expect and How to Get Through It by Keren
Stronach; Caregivers’ Guide for Bone Marrow/Stem Cell Transplant, Practical
Perspectives; and The New Normal: Life After Bone Marrow/Stem Cell
Transplant, a compelling, Emmy Award-winning video about six transplant
survivors.
T
The majority of SCT patients return to a “new normal” and active lifestyle after
transplant. Others have some lingering effects but do not experience significant
deterioration in their quality of life. So, begin this life journey with a better
understanding of what to expect and how best to manage the way through it.
Keep in mind throughout this experience that you are not alone. The
inspirational comments below may help you through the challenges ahead:
“Reducing the anxiety, I think goes to this idea of hope. If I can be well
enough prepared, if I can know enough about this to feel some control over it,
then I think I’m going to have more hope.” — Marla, SCT survivor
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“People need to know that they can do this. It may not sound like something
they want to do, but they need to know they can do it, and that they can do it
with the help of their health care team and the people around them who are
important to them.” — Pat, SCT nurse
“I believe that people should look at the transplant process as a minor
interruption in their lives. I think that if you just hold on to hope, it kind of
helps you through the day, and maybe that’s all you need to do is get through
the day. And then the next day, get through that day. And once I learned to do
that, it became much easier to take each day at a time, and before I knew it,
the whole process was over.” — Juanita, SCT survivor
“You have to believe in a lot of things. You have to believe in the people
around you; you have to believe in yourself, so that you can muster up all of
the strength it’s going to take to get through.” — Julia, wife and caregiver of
SCT survivor
“You need to be patient. So you just have to keep your eye on the future, but
take the time necessary to heal your body. It takes a long time.” — Harry,
SCT survivor
“It is a life-changing experience, there’s no question about that. And it’s
hard to believe that you will grow from this and that the change could be
positive, but it is.” — Marla, SCT survivor
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Glossary
Adjuvant chemotherapy—Drugs used to
kill cancer cells. They are given with other
treatments, such as surgery or radiation, to
destroy areas of tumor.
Allogeneic transplant—The person
donating the bone marrow or stem cells is a
closely matched family member, usually a
brother or sister. Or the person donating the
bone marrow is a closely matched unrelated
donor.
Alopecia—A partial or complete hair loss,
usually a temporary side effect of the
chemotherapy.
Anemia—A condition that occurs when the
body’s red blood cell count is low.
Antibody—A protein produced by the white
blood cells (leukocytes) to battle foreign
substances that enter the body, such as
bacteria.
Antigen—A foreign substance that induces
the production of antibodies.
Apheresis—The peripheral blood stem cell
collection process in which blood is taken
from a patient and circulated through a
machine that separates out stem cells. The
remaining cells are returned to the patient.
Appeal—Application for review of records,
medical history, insurance claim.
Autologous transplant—The patient
donates his/her own bone marrow or stem
cells prior to treatment for reinfusion later
after high doses of chemotherapy and/or
radiation.
Bone marrow—The spongy tissue found in
the cavities of the body’s bones where all
blood cells are produced.
Bone marrow harvest—The procedure of
collecting stem cells from the bone marrow.
Bone marrow transplant (BMT)—A
procedure developed to treat some forms of
cancer and other diseases. There are several
types of BMT’s, depending on who donates
the marrow (see Autologous, Allogeneic, and
Syngeneic). Stem cells are removed from the
bone marrow for transplant.
Cancer cells—Uncontrolled growth of
abnormal cells in the body. Cancer cells can
grow, divide, and invade normal tissue in the
body.
Cell—The basic building block of life. In
your blood, you will find many different
types of these.
Central line or central venous catheter—A
small, plastic tube inserted in a large vein to
inject or remove fluids. The central line used
in stem cell transplant allows blood samples
to be drawn, drugs to be given, and the
actual transplant to occur with little
discomfort.
Chemotherapy—Treatment with one or
more anticancer drugs to try to stop or slow
the growth of cancer cells.
Clinical trials—Long-term research studies
that test cancer treatment.
Colony stimulating factor—The drug given
to autologous stem cell transplant patients
before and during the harvest to increase
the number of stem cells in the blood. It is
also given to allogeneic donors to increase
the number of cells in the circulating blood
so they can be collected for transplant. Also
called growth factor.
Complete Blood Count (CBC)—A blood
test done in a laboratory to find out the
number of red blood cells (RBC’s), white
blood cells (WBC’s), platelets, hemoglobin,
and hematocrit in your blood. These blood
cells are made in the marrow of your bones.
Conditioning—A phase in the bone
marrow/stem cell transplant process
designed to destroy cancer cells more
–––––––––––––––––––––––––––––––––––––––– 24 ––––––––––––––––––––––––––––––––––––––––
–––––––––––––––––––––––––––––––––––––– Glossary ––––––––––––––––––––––––––––––––––––––
effectively than standard doses of
chemotherapy. Conditioning involves
combining high doses of chemotherapy
and/or radiation.
Cord blood—Blood found in the umbilical
cord.
Cord blood transplant—A procedure
where umbilical blood stem cells are used in
a stem cell transplant.
CT (Confirmatory Typing)—This test
confirms the HLA compatibility of the donor
and the patient and is performed on all
potential family or unrelated donors.
DNA—One of the nucleic acids found in the
nucleus of the cell. It contains the
information that allows a cell to grow and
divide and become a unique (or particular
type of) cell.
Engraftment—Process in which
transplanted stem cells begin to grow in the
recipient’s bone marrow and produce new
white blood cells, red blood cells, and
platelets.
Erythrocytes—Red blood cells that carry
oxygen.
Genes—Found in the nucleus of the cell.
They contain the hereditary information
that is passed on from cell to cell.
Graft failure—Complication after a
transplant in which the stem cells do not
grow in the recipient’s bone marrow and do
not produce new white blood cells, red blood
cells, and platelets.
Graft-versus-host disease (GVHD)—A
condition where transplanted stem cells
may react against the patient’s body.
Symptoms may range from a minor skin rash
to more serious problems resulting in lifethreatening conditions.
Growth factor—(see Colony stimulating
factor)
Harvest—(see Stem cell retrieval)
Hematocrit—The proportion of the blood
that consists of packed red blood cells.
Hematologist—A doctor who specializes in
the diseases of the blood.
Hematopoietic stem cells—Cells that
mature into one of three types of blood cells:
white blood cells, red blood cells, or
platelets.
Hemoglobin—The part of the red blood cell
which carries oxygen.
HLA (Human Leukocyte Antigen)—
Antigens found on a person’s cells that help
the body to identify its own cells from
invading or foreign cells.
HLA typing—The identification of a
person’s key antigens used for identifying
compatible donors.
Immune compromised—A condition in
which the patient has a much higher risk of
infection due to a weak immune system.
Immune system—The group of organs and
cells in the body that fight infection and
other diseases.
Immunosuppressed—Lowered resistance to
disease. It may be a temporary condition
caused by a lowered white blood cell count
or a side effect of receiving chemotherapy.
Informed consent—Hospital form, signed
by the patient, which documents an
understanding of medical procedures.
Infusion—Slow introduction of fluid into a
vein referred to as an IV (intravenous).
Intravenous—Within a vein; into the vein.
Leukocytes—White blood cells that fight
infection.
Lymphocytes—A type of white blood cell
that is part of the immune system.
Metastasis—The spread of cancer from one
part of the body to another.
–––––––––––––––––––––––––––––––––––––––– 25 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––– A Resource Guide for Bone Marrow/Stem Cell Transplant ––––––––––––––––––
Mobilization—Moving more stem cells from
the bone marrow into the blood stream
through chemotherapy and/or a growth
factor.
MUD—Matched unrelated donor.
Oncologist—A doctor who specializes in the
study and treatment of cancer.
Patient advocate—A person who acts in the
best interest of the patient or serves the
patient’s needs and may act on his/her
behalf.
Peripheral Blood Stem Cells (PBSC)—
Stem cells that circulate in the blood.
Peripheral Blood Stem Cell Transplant—
Stem cells are removed from the blood and
infused after high-dose chemotherapy. This
can be done for both autologous and
allogeneic transplants.
Platelets—Blood cells that act as clotting
agents to prevent bleeding.
Prognosis—The predicted or likely
outcome.
Protocol—A specifically designed
treatment plan.
Purging—The process of removing certain
types of cells from the stem cell product
before transplanting it to a patient. In
autologous transplants, marrow may be
purged of lingering cancer cells.
Radiation—Treatment to kill cancer cells
using high-energy rays from x-rays, electron
beams, or radioactive isotopes.
Reinfusion—The return of healthy stem
cells into the transplant recipient’s body.
Relapse—The return of cancer after a
period of being cancer-free.
Remission—Complete or partial
disappearance of cancer cells and
symptoms.
Rescue process—Another term for a stem
cell transplant. The re-infusion of healthy
stem cells following high doses of
chemotherapy or radiation.
Staging—The process of determining and
describing the extent of the cancer.
Stem cell—The “parent cell.” Every type of
blood cell in the body begins its life as a
stem cell. The stem cells then divide and
form the different cells that make up the
blood and immune system. Stem cells are
found in both the bone marrow and
circulating blood.
Stem cell retrieval—The process of
collecting stem cells from the circulating
blood stream following administration of
growth factors to increase their numbers.
(Also called harvest).
Stem cell transplant—(see Peripheral
blood stem cell transplant).
Syngeneic transplant—The person
donating the bone marrow or stem cells is
an identical twin.
Thrombocytopenia—Low platelet count.
Red blood cells (RBC)—Cells carrying
oxygen to all parts of the body
(erythrocytes).
Transfusion—The transferring of blood or
blood products directly into a vein or artery.
Reimbursement—Refund, being paid back
for monies used out of pocket.
White blood cells (WBC)—Cells that help
fight infection and disease (leukocytes).
–––––––––––––––––––––––––––––––––––––––– 26 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––––––––––––––––––– Resource Listing ––––––––––––––––––––––––––––––––––
Resource Listing
Stem Cell Transplant
Information and Support
BMT InfoNet
2900 Skokie Valley Road, Suite B
Highland Park, IL 60035
888-597-7674 or 847-433-3313
Email: [email protected]
www.bmtinfonet.org
The Bone Marrow Foundation
337 E. 88th Street, Suite 1B
New York, NY 10128
800-365-1336 or 212-838-3029
Email: [email protected]
www.bonemarrow.org
Center for International Blood and
Marrow Transplant Research (CIBMTR)
Health Policy Institute
Medical College of Wisconsin
8701 Watertown Plank Road
P.O. Box 26509
Milwaukee, WI 53226
414-456-8325
E-mail: [email protected]
www.cibmtr.org
National Bone Marrow Transplant Link
(nbmtLINK)
20411 W. 12 Mile Road, Suite 108
Southfield, MI 48076
800-LINK-BMT (800-546-5268) or
248-358-1886
Email: [email protected]
www.nbmtlink.org
National Marrow Donor Program
(NMDP)
3001 Broadway Street Northeast, Suite 500
Minneapolis, MN 55413-1753
800-MARROW-2 (800-627-7692)
888-999-6743 Office of Patient Advocacy
Email: [email protected]
www.marrow.org
Stem Cell Donor Information
Including Bone Marrow,
Peripheral Blood, and Cord
Blood
American Indian/Alaska Native
Initiative National Marrow Donor
Program (NMDP)
3001 Broadway Street Northeast, Suite 500
Minneapolis, MN 55413-1753
800-627-7692
888-999-6743 Office of Patient Advocacy
Email: [email protected]
www.marrow.org
Asians for Miracle Marrow Matches
231 E. Third Street, Suite G107
Los Angeles, CA 90013
888-A3M-HOPE (888-236-4673)
Email: [email protected]
www.asianmarrow.org
Caitlin Raymond International Registry
University of Massachusetts Memorial
Medical Center
55 Lake Avenue North
Worcester, MA 01655
800-726-2824 or 508-334-8969
Email: [email protected]
www.crir.org
–––––––––––––––––––––––––––––––––––––––– 27 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––– A Resource Guide for Bone Marrow/Stem Cell Transplant ––––––––––––––––––
Cryobanks International
270 S. Northlake Boulevard, Suite 1012
Altamonte Springs, FL 32701
407-834-8333 or 800-869-8608
Email: [email protected]
www.cryo-intl.com
Siblings Donor Cord Blood Program
Children’s Hospital & Research Center at
Oakland
5700 Martin Luther King Jr. Way
Oakland, CA 94609
510-450-7605
Email: [email protected]
http://www.chori.org/siblingcordblood/
Gift of Life
7700 Congress Avenue, Suite 2200
Boca Raton, FL 33487
800-962-7769 or 561-988-0100
Northeast Regional Office: 212-790-4258
Israel Office: 972-2-930-9691
www.giftoflife.org
TEPNEL Lifecodes
550 West Avenue
Stamford, CT 06902
800-915-3695 or 888-915-6527
Email: [email protected]
www.bonemarrowtest.com
HLA Registry
A Division of Community Blood Services
Cancer Information and Support
800 Kinderkamack Road, Suite 300
Oradell, NJ 07649
800-336-3363 or 201-705-1799
Email: [email protected]
www.communitybloodservices.org
National Marrow Donor
Program (NMDP)
3001 Broadway Street Northeast, Suite 500
Minneapolis, MN 55413-1753
800-627-7692
Email: [email protected]
www.marrow.org
New York Blood Center
310 E. 67th Street
New York, NY 10021
800-933-2566 or 212-570-3297
Email: [email protected]
www.nybloodcenter.org
American Cancer Society
1599 Clifton Road, NE
Atlanta, GA 30329
800-ACS-2345 (800-227-2345) or
404-320-3333
Email: http://www.cancer.org/asp/contactUs/
www.cancer.org
CancerCare, Inc.
275 Seventh Avenue
New York, NY 10001
800-813-HOPE or 212-712-8080
Email: [email protected]
www.cancercare.org
Cancer Information Service
National Cancer Institute (NCI)
6116 Executive Boulevard
Room 3036A
Bethesda, MD 20892-8322
800-4-CANCER or 800-422-6237
Email: [email protected]
www.cancer.gov
–––––––––––––––––––––––––––––––––––––––– 28 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––––––––––––––––––– Resource Listing ––––––––––––––––––––––––––––––––––
Cancervive, Inc.
11636 Chayote Street
Los Angeles, CA 90049
800-426-2873 or 310-203-9232
Email: [email protected]
www.cancervive.org
National Coalition for Cancer Survivorship
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910
877-NCCS-YES or 301-650-9127
Email: [email protected]
www.canceradvocacy.org
Coping With Cancer Magazine
P.O. Box 682268
Franklin, TN 37068
615-790-2400
Email: [email protected]
www.copingmag.com
Vital Options International
TeleSupport Cancer Network
15821 Ventura Boulevard, Suite 645
Encino, CA 91436-2946
800-477-7666 or 818-788-5225
Email: [email protected]
www.vitaloptions.org
Cure Magazine
Cancer Information Group
3500 Maple Avenue, Suite 750
Dallas, TX 75246
800-210-2873 or 214-367-3500
Email: [email protected]
www.curetoday.com
Gilda’s Club Worldwide
322 Eighth Avenue, Suite 1402
New York, NY 10001
888-445-3248
Email: [email protected]
www.gildasclub.org
The Wellness Community
919 18th Street, NW, Suite 54
Washington, DC 20006
888-793-9355 or 202-659-9709
Email: [email protected]
www.thewellnesscommunity.org
Women’s Cancer Resource Center
5741 Telegraph
Oakland, CA 94609
888-421-7900 or 510-420-7900
Email: [email protected]
www.wcrc.org
Caregiving Support
Lance Armstrong Foundation/Livestrong
P.O. Box 161150
Austin, TX 78716-1150
866-235-7205 or 512-236-8820
Email: [email protected]
www.livestrong.org
Lotsa Helping Hands
365 Boston Post Road, Suite 157
Sudbury, MA 01776
978-505-0009
Email: [email protected]
www.lotsahelpinghands.com
Family Caregivers Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
415-434-3388 or 800-445-8106
Email: [email protected]
www.caregiver.org
Friends’ Health Connection
P.O. Box 114
New Brunswick, NJ 08903
800-483-7436 or 732-418-1811
Email: [email protected]
www.friendshealthconnection.org
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––––––––––––––––––– A Resource Guide for Bone Marrow/Stem Cell Transplant ––––––––––––––––––
National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
301-718-8444
Email: [email protected]
www.caregiving.org
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
800-896-3650
Email: [email protected]
www.thefamilycaregiver.org
National Organization for Empowering
Caregivers
425 W. 23rd Street, Suite 9B
New York, NY 10011
212-807-1204
Email: [email protected]
www.nofec.org
National Respite Locator Service
800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
800-773-5433
www.respitelocator.org
Rosalynn Carter Institute for
Caregiving
Georgia Southwestern State University
800 Wheatley Street
Americus, GA 31709
229-928-1234
Email: [email protected]
www.rosalynncarter.org
Well Spouse Foundation
63 West Main Street, Suite H
Freehold, NJ 07728
800-838-0879
Email: [email protected]
www.wellspouse.org
Children’s Programs
and Services
Candlelighters Childhood
Cancer Foundation
P.O. Box 498
Kensington, MD 20895-0498
800-366-2223 or 301-962-3520
Email: [email protected]
www.candlelighters.org
CaringBridge
3440 Federal Drive, Suite 100
Eagan, MN 55122
651-452-7940
Email: www.caringbridge.com/support.htm
www.caringbridge.com
Children With Leukemia c/o
The Jennifer Lynn Stroud Foundation
14160 Dallas Parkway #300
Dallas, TX 75254
972-308-8383
Email: [email protected]
www.jlsfoundation.org
Children’s Leukemia
Foundation of Michigan
(Michigan Residents)
29777 Telegraph Road, Suite 1651
Southfield, MI 48034
800-825-2536 or 248-353-8222
Email: [email protected]
www.leukemiamichigan.org
Children’s Leukemia
Research Association, Inc.
585 Stewart Avenue, Suite 18
Garden City, NY 11530
516-222-1944
Email: [email protected]
www.childrensleukemia.org
–––––––––––––––––––––––––––––––––––––––– 30 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––––––––––––––––––– Resource Listing ––––––––––––––––––––––––––––––––––
Children’s Organ Transplant
Association (COTA)
2501 COTA Drive
Bloomington, IN 47403
800-366-2682
www.cota.org
Gilda’s Club Worldwide
Noogieland
322 Eighth Avenue, Suite 1402
New York, NY 10001
888-445-9248
Email: [email protected]
www.gildasclub.org
Kids Cancer Network
P.O. Box 4545
Santa Barbara, CA 93140
Email: [email protected]
www.kidscancernetwork.org
National Childhood Cancer Foundation
440 E. Huntington Drive, Suite 300
P.O. Box 60012
Arcadia, CA 91066-6012
800-458-6223 or 626-447-1674
Email: [email protected]
www.nccf.org
SuperSibs!
4300 Lincoln Avenue, Suite I
Rolling Meadows, IL 60008
Toll Free: 866-444-SIBS(7427)
Illinois: 847-705-SIBS
Email: [email protected]
www.supersibs.org
Fertility
American Association of Tissue Banks
1320 Old Chain Bridge Road, Suite 450
McLean, VA 22101
703-827-9582
Email: [email protected]
www.aatb.org
American Society for
Reproductive Medicine
1209 Montgomery Highway
Birmingham, AL 35216
205-978-5000
Email: [email protected]
www.asrm.org
National Children’s Cancer Society
1015 Locust, Suite 600
St. Louis, MO 63101
800-5-FAMILY or 314-241-1600
Email: [email protected]
http://nationalchildrenscancersociety.com
Fertile Hope
P.O. Box 624
42 W. 24th Street
New York, NY 10014
888-994-4673
Email: http://www.fertilehope.org/contact/info.cfm
www.fertilehope.org
Starbright Foundation
1850 Sawtelle Boulevard, Suite 450
Los Angeles, CA 90025
800-315-2580 or 310-479-1212
Email: [email protected]
www.starbright.org
Genetics and IVF Institute
3020 Javier Road
Fairfax, VA 22031
800-552-4363 or 703-698-7355
Email: [email protected]
www.givf.com
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Resolve: The National
Infertility Association
7910 Woodmont Avenue, Suite 1350
Bethesda, MD 20814
888-623-0744 or 301-652-8585
Email: [email protected]
www.resolve.org
My Friends Care Bone Marrow
Transplant Fund (Michigan Residents)
148 S. Main Street, Suite 101
Mt. Clemens, MI 48043
586-783-7390
Email: [email protected]
www.myfriendscare.org
Financial Assistance,
Fundraising & Insurance
National Association of
Hospital Hospitality Houses
P.O. Box 18087
Asheville, NC 28814-0087
800-542-9730 or 828-253-1188
Email: [email protected]
www.nahhh.org
America’s Health Insurance Plans
601 Pennsylvania Avenue, NW
Washington, DC 20004
202-778-3200
Email: [email protected]
www.ahip.org
Cancer Legal Resource Center
Loyola Law School
919 S. Albany Street
Los Angeles, CA 90019-0015
213-736-1455 or 866-843-2572
Email: [email protected]
Children’s Organ Transplant
Association (COTA)
2501 COTA Drive
Bloomington, IN 47403
800-366-2682
Email: [email protected]
www.cota.org
Medicare Rights Center
1460 Broadway, 17th Floor
New York, NY 10036
212-869-3850
Email: [email protected]
www.medicarerights.org
National Foundation for Transplants
1102 Brookfield, Suite 200
Memphis, TN 38119
800-489-3863 or 901-684-1697
Email: [email protected]
www.transplants.org
National Marrow Donor Program
Office of Patient Advocacy
3001 Broadway NE, Suite 500
Minneapolis, MN 55413
888-999-6743
Email: [email protected]
www.marrow.org
National Transplant Assistance Fund
3475 West Chester Pike, Suite 230
Newtown Square, PA 19073
800-642-8399 or 610-353-9684
Email: [email protected]
www.transplantfund.org
Nielson Organ Transplant Foundation
(Northeast Florida Residents)
580 W. 8th Street, Suite 8000
Jacksonville, FL 32209
904-244-9823
Email: [email protected]
www.notf.org
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––––––––––––––––––––––––––––––––––– Resource Listing ––––––––––––––––––––––––––––––––––
Patient Advocate Foundation
753 Thimble Shoals Boulevard, Suite 200
Newport News, VA 23606
800-532-5274 or 757-873-6668
Email: [email protected]
www.patientadvocate.org
Pharmaceutical Research and
Manufacturers of America
Prescription Drug Patient
Assistance Program
1100 Fifteenth Street, NW
Washington D.C. 20005
888-477-2669 or 202-835-3400
www.pparx.org
Disease-Related Information
Anemia
Aplastic Anemia & Myelodysplatic
Syndrome (MDS) International
Foundation, Inc.
P.O. Box 613
Annapolis, MD 21404-0613
800-747-2820 or 410-867-0242
Email: [email protected]
www.aplastic.org
National Brain Tumor Foundation
22 Battery Street
San Francisco, CA 94111
800-394-CURE or 510-839-9777
Email: [email protected]
www.braintumor.org
Breast Cancer
Adelphi New York Statewide Breast
Cancer Hotline and Support Program
Adelphi University School of Social Work
Garden City, NY 11530
800-877-8077 or 516-877-4444
Email: [email protected]
www.adelphi.edu/nysbreastcancer
The Susan G. Komen Breast Cancer
Foundation
5005 LBJ Freeway, Suite 250
Dallas, TX 75244
800-462-9273 or 972-855-1600
Email: [email protected]
www.komen.org
Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite 200
Eugene, OR 97401
800-828-4891 or 541-687-4658
Email: [email protected]
www.fanconi.org
Y-Me National Breast
Cancer Organization
212 W. Van Buren, Suite 500
Chicago, IL 60607
800-221-2141 (English) or
800-986-9505 (Spanish)
Email: [email protected]
www.y-me.org
Brain Tumor
Immune Deficiency Disorders
American Brain Tumor Association
2720 River Road, Suite 146
Des Plaines, IL 60018
800-886-2282 or 847-827-9910
Email: [email protected]
www.abta.org
Immune Deficiency Foundation
40 W. Chesapeake Avenue, Suite 308
Towson, MD 21204
800-296-4433
Email: [email protected]
www.primaryimmune.org
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Leukemia & Lymphoma
Transportation
The Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
White Plains, NY 10605
800-955-4572 or 914-949-5213
Email: [email protected]
www.lls.org
Air Care Alliance
Leukemia Research Foundation
(Illinois Residents or those within
a 100-mile Radius of Chicago)
2700 Patriot Boulevard, Suite 100
Glenview, IL 60026
888-558-5385 or 847-424-0600
Email: [email protected]
www.leukemia-research.org
Lymphoma Research Foundation
8800 Venice Boulevard, Suite 207
Los Angeles, CA 90034
800-500-9976 or 310-204-7040
Or
111 Broadway, 19th Floor
New York, NY 10006
800-235-6848 or 212-349-2910
Email: [email protected]
www.lymphoma.org
Multiple Myeloma
International Myeloma Foundation
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
800-452-2873
Email: [email protected]
www.myeloma.org
1515 East 71st Street, Suite 312
Tulsa, OK 74136
888-260-9707 or 918-745-0384
Email: [email protected]
www.aircareall.org
Angel Flight America, Inc.
P.O. Box 17467
Memphis, TN 38187-0467
877-858-7788 or 901-332-4034
800-446-1231 (to request free flights)
www.angelflightamerica.org
Corporate Angel Network
Westchester County Airport
One Loop Road
White Plains, NY 10604-1215
866-328-1313 or 914-328-1313
Email: [email protected]
www.corpangelnetwork.org
National Patient Travel Center
c/o Mercy Medical Airlift
4620 Haygood Road, Suite 1
Virginia Beach, VA 23455
888-675-1405 or 757-318-9175
Email: [email protected]
www.patienttravel.org
Multiple Myeloma Research Foundation
51 Locust Avenue, Suite 204
New Canaan, CT 06840
203-972-1250
Email: [email protected]
www.multiplemyeloma.org
––––––––––––––––––––––––––––––––––––––––– 34 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––––––––––––––– Information on the Internet ––––––––––––––––––––––––––––––
Information on the Internet
The Internet is a valuable tool for cancer or
medical research. It offers a wealth of
information, some helpful, some misleading.
Rely on credible sources for information,
such as hospitals or medical associations.
Proceed with caution when searching on the
Internet. Evaluate material by asking:
• What is the source of this information?
• Is it fact or opinion?
• Is it based on someone’s experience?
• How current is this information?
• Is this site set up to promote a product?
When evaluating Internet sites, check the
address (URL). The final segment of the
address offers a general idea of who is
sponsoring the Web site. Examples include:
.edu …site sponsored by an educational
institution
.gov …site sponsored by a government
agency
.org …site sponsored by a nonprofit
organization
.com …site sponsored by a commercial
company
Alternative and Complementary Medicine
National Center for Complementary and
Alternative Medicine
www.nccam.nih.gov
National Institute of Health Office of Dietary
Supplements
http://dietary-supplements.info.nih.gov
Office of Cancer Complementary and
Alternative Medicine
http://cancer.gov/cam/index.html
Caregiving
Family Voices
www.familyvoices.org
Strength for Caring
www.strengthforcaring.com
Today’s Caregiver Magazine
www.caregiver.com
Children
2bMe
www.2bme.org
Cancer Source Kids
www.cancersourcekids.com
Group Loop-Online Support for
Teens with Cancer
www.grouploop.org
Kid Support, Inc.
www.kid-support.org
Kids Konnected
www.kidskonnected.org
Clinical Trial Information
Center Watch Clinical Trials Listing Service
www.centerwatch.com
Coalition of National Cancer Cooperative
Groups, Inc.
www.cancertrialshelp.org
National Cancer Institute
www.cancer.gov/clinical_trials/
National Institutes of Health
www.clinicaltrials.gov
––––––––––––––––––––––––––––––––––––––––– 35 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––– A Resource Guide for Bone Marrow/Stem Cell Transplant ––––––––––––––––––
Coping
Association of Cancer Online Resources
Listserv
http://listserv.acor.org
BMT Support Online
www.bmtsupport.org
Cancer Hope Network
www.cancerhopenetwork.org
Planet Cancer
www.planetcancer.org
Foreign Language
ACS: Informacion de referencia sobre el
cancer
www.cancer.org/docroot/esp/esp_0.asp
CancerCare-Espanol
www.cancercare.org/EnEspanol/EnEspanolm
ain.cfm
Cancer.gov-Algunos documentos especificos
estan en espanol
www.cancer.gov/espanol
NOAH New York Online Access to Health:
Cancer
www.noah-health.org/en/health
OncoLink
www.oncolink.com
People Living With Cancer
www.plwc.org
Specific Cancers
Amyloidosis Support Network
www.amyloidosis.org
International Waldenstrom’s
Macroglobulinemia Foundation
www.iwmf.com
National Ovarian Cancer Coalition
www.ovarian.org
Patients Against Lymphoma
www.lymphomation.org
Women’s Cancer Network
www.wcn.org
Espanol-healthfinder
http://healthfinder.gov/espanol
Institutos Nacionales de la Salud
http://salud.nih.gov
Statistics:
Center for International Blood and Marrow
Transplantation Research
General Cancer Information
ACOR-Association of Cancer Online
Resources
www.acor.org
Survivorship
Beyond the Cure
www.beyondthecure.org
National Cancer Institute
www.cancer.gov
Cancer and Careers
www.cancerandcareers.org
CancerSource.com
www.cancersource.com
National Coalition for Cancer Survivorship
www.canceradvocacy.org
––––––––––––––––––––––––––––––––––––––––– 36 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––––––––––––––– Information on the Internet ––––––––––––––––––––––––––––––
Symptom Management
CancerSymptoms.org
www.cancersymptoms.org
Look Good…Feel Better
www.lookgoodfeelbetter.org
Look Good…Feel Better for Men
www.lookgoodfeelbetterformen.org
Treatment
ChemoCare
www.chemocare.com
Lab Tests Online
www.labtestsonline.org
Radiology Info
www.radiologyinfo.org
www.cibmtr.org
National Lymphedema Network
www.lymphnet.org
Please contact the National Bone Marrow Transplant Link to report any new resources that
may be helpful to others. The nbmtLINK is not responsible for the accuracy of any content
in this listing.
––––––––––––––––––––––––––––––––––––––––– 37 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––– A Resource Guide for Bone Marrow/Stem Cell Transplant ––––––––––––––––––
Books
Across the Chasm: A Caregiver’s Story
by Naomi L. Zikmund-Fisher
(BMT Infonet, 2002)
Adult Leukemia: A Comprehensive Guide
for Patients and Families
by Barbara Lackritz (2001)
The Alpha Book on Cancer and Living: For
Patients, Family and Friends
by Brent Ryder (1997)
The Alternative Medicine Handbook: The
Complete Reference Guide to Alternative
and Complementary Therapies
by Barrie Cassileth (1998)
Anatomy of an Illness as Perceived by the
Patient: Reflections on Healing and
Regeneration by Norman Cousins (2001)
The Anatomy of Hope: How People Prevail
in the Face of Illness
by Jerome Groopman (2005)
Cancer in Context: A Practical Guide to
Supportive Care by James Brennan (2004)
Cancer Survivor’s Almanac: Charting your
Journey by National Coalition for Cancer
Survivorship, edited by Barbara Hoffman
(2004)
Cancer Survivor’s Nutrition and Health
Guide: Eating Well and Getting Better
During and After Cancer Treatment
by Gene Spiller and Bonnie Bruce, PhD, RD
(1997)
Cancer Talk
by Selma Schimmel with Barry Fox (1999)
The Caregiver’s Companion
by Theola Jones (2000)
Caregivers’ Guide for Bone Marrow/Stem
Cell Transplant: Practical Perspectives
by National Bone Marrow Transplant Link
(2003)
Autologous Stem Cell Transplants:
A Handbook for Patients
by Susan Stewart (2000)
The Caregiver’s Helpbook by V. Schmall, M.
Clevelant, M. Sturdevant (2000)
Bone Marrow and Blood Stem Cell
Transplant: A Guide for Patients
by Susan Stewart (2002)
Caregiver’s Reprieve: A Guide to Emotional
Survival When You’re Caring for Someone
You Love by Avrene Brandt (1997)
Bone Marrow Transplants: A Guide for
Cancer Patients and their Families
by Marianne L. Shaffer, R.N. (1994)
Caregiving: A Step-by-Step Resource for
Caring for People with Cancer at Home
by Peter S. Houts and Julia Bucher (2003)
Cancer Etiquette: What to Say, What to Do,
When Someone You Know or Love
Has Cancer by Rosanne Kalick (2005)
Caregiving Sourcebook
by Joyce Brennfleck Shannon (2001)
Cancer Fitness: Exercise Programs for
Patients and Survivors by Lance Armstrong
and Anna L. Schwartz (2004)
Caregiving: The Spiritual Journey
of Love, Loss and Renewal
by Beth Witrogen McLeod (2000)
––––––––––––––––––––––––––––––––––––––––– 38 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––––––––––––––––––––––– Books ––––––––––––––––––––––––––––––––––––––
Caring and Competent Caregivers
by R. Moroney, P. Dokecki, J. Gates, K.
Hayes, et al. (1998)
Caring for You, Caring for Me, Education
and Support for Caregivers by D. Haigler, K.
Mims, and J. Nottingham (1998)
Caring for Yourself While Caring for
Others: A Caregiver’s Survival and Renewal
Guide by Lawrence Brammer, PhD and
Marian Bingea (1999)
Everyone’s Guide to Cancer Therapy
by Malin Dollinger, M.D., Ernest H.
Rosenbaum, M.D., Margaret Temperao, M.D.,
Sean J. Mulvihill, M.D. (2002)
Fighting for Our Future: How Young
Women Find Strength, Hope, and Courage
while Taking Control of Breast Cancer
by Beth Murphy (2002)
Finding the Money: A Guide to Paying your
Medical Bills
by Diane Pammenter-Tolley (2001)
Childhood Leukemia: A Guide for Families,
Friends and Caregivers
by Nancy Keene (2nd ed. 1999)
Full Catastrophe Living: Using the Wisdom
of Your Body and Mind to Face Stress,
Pain, and Illness by Jon Kabat-Zinn (1991)
Choices in Healing: Integrated the Best
of Conventional and Complementary
Approaches to Cancer
by Michael Lerner (1996)
Getting Well Again: The Bestselling Classic
about the Simontons: Revolutionary
Lifesaving Self-Awareness Techniques
by Carl O. Simonton, Stephanie MatthewsSimonton, and James Creighton (1992)
Close to the Bone: Life Threatening Illness
and the Search for Meaning
by Jean Bollen-Shinoda (1998)
The Gifts of Caregiving: Stories of
Hardship, Hope and Healing
by Connie Goldman (2002)
The Courage to Laugh: Humor, Hope and
Healing in the Face of Death and Dying
by Allen Klein (1998)
Going for the Cure
by Francesca Morosani-Thompson (1992)
Daily Comforts for Caregivers
by Pat Samples (1999)
Grace and Grit: Spirituality and Healing
in the Life and Death of Treya Killam
Wilber by Ken Wilber (2001)
Diagnosis: Cancer
by Wendy Schlessel Harpham (2003)
Guide to Stress Reduction
by L. John Mason (2001)
A Dietician’s Cancer Story
by Diana Dyer (2002)
Healing into Life and Death
by Stephen Levine (1989)
Everyone’s Guide to Cancer Supportive
Care: A Comprehensive Handbook for
Patients and their Families by Ernest
Rosenbaum, M.D. & Isadora Rosenbaum
(2005)
The Healing Power of Humor: Techniques
for Getting Through Loss, Setbacks, Upsets,
Disappointments, Difficulties, Trials,
Tribulations, and All That Not-so-Funny
by Allen Klein (2003)
––––––––––––––––––––––––––––––––––––––––– 39 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––– A Resource Guide for Bone Marrow/Stem Cell Transplant ––––––––––––––––––
Healing Yourself: A Step-by-Step Program
for Better Health Through Imagery
by Martin L. Rossman (1990)
Learn to Relax: A Practical Guide to
Easing Tension and Conquering Stress
by Mike George (1998)
Helping Yourself Help Others: A Book for
Caregivers by Rosalyn Carter and Susan Ma
Golant (1996)
Living with Childhood Cancer: A Practical
Guide to Help Families Cope by Leigh
Woznick and Carol D. Goodheart (2001)
Homecare Management of the
Blood Cell Transplant Patient
by Cathy H. Kelley, (editor) Susan Randolph,
Linda McBride, Ellen W. Leum (1998)
Love, Honor and Value: A Family Caregiver
Speaks Out about the Choices and
Challenges of Caregiving
by Suzanne Geffen Mintz (2002)
How to Live Between Office Visits: A Guide
to Life, Love and Health
by Bernie Siegel (1995)
Love, Medicine and Miracles: Lessons
Learned about Self-Healing from a
Surgeon’s Experience with Exceptional
Patients by Bernie S. Siegel (2002)
The Human Side of Cancer: Living with
Hope, Coping with Uncertainty by Jimmie
Holland and Sheldon Lewis (2001)
In the Country of Illness: Comfort
and Advice for the Journey
by Robert Lipsyte (1998)
Informed Decisions: The Complete Book of
Cancer Diagnosis, Treatment, and Recovery
by Harmon J. Eyre, M.D., Dianne Partie
Lange, and Lois B. Morris (2001)
It’s Always Something
by Gilda Radner (2000)
It’s Not About the Bike: My Journey
Back to Life by Lance Armstrong
and Sally Jenkins (2003)
The Journey Through Cancer: An
Oncologist’s Seven-Level Program for
Healing and Transforming the Whole
Person by Jeremy R. Geffen (2001)
Kitchen Table Wisdom: Stories that Heal
by Rachel Naomi Remen (2001)
Making Informed Medical Decisions: Where
to Look and How to Use what You Find by
Nancy Oster, Lucy Thomas, and Darol Joseff,
M.D. (2000)
Mapping the Maze: A Personal Financial
Guide to Blood Stem Cell Transplants
by National Marrow Donor Program (2003)
Me and My Marrow: A Kid’s Guide
to Bone Marrow Transplants
by Karen Crowe (1999)
Minding the Body, Mending the Mind
by Joan Borysenko (2000)
Mom’s Marijuana: Life, Love and Beating
the Odds by Dan Shapiro (2001)
My Grandfather’s Blessings: Stories of
Strength, Refuge, and Belonging
by Rachel Naomi Remen, M.D. (2001)
The New Cancer Survivors: Living with
Grace, Fighting with Spirit
by Natalie Spingarn (1999)
––––––––––––––––––––––––––––––––––––––––– 40 ––––––––––––––––––––––––––––––––––––––––
––––––––––––––––––––––––––––––––––––––– Books ––––––––––––––––––––––––––––––––––––––
Not Just One in Eight: Stories of Breast
Cancer Survivors and Their Families
by Barbara Stevens (2000)
Peace, Love and Healing: Bodymind
Communication and the Path to SelfHealing: An Exploration
by Bernie Siegel (1998)
Sexuality and Cancer: For the Woman Who
Has Cancer and Her Partner
by American Cancer Society (2005)
Survivors’ Guide For Bone Marrow/Stem
Cell Transplant: What to Expect and
How to Get Through It
by Keren Stronach and National Bone
Marrow Transplant Link (2002)
Take This Book to the Hospital with You: A
Consumer’s Guide to Surviving Your
Hospital Stay by Charles Inlander and
Ed Weiner (1997)
Time on Fire: My Comedy of Terrors
by Evan Handler (2001)
Sexuality and Fertility after Cancer
by Leslie R. Schover (1997)
Understanding Medical Information: A
User’s Guide to Informatics and Decision
Making by Theresa Jordan (2002)
Share the Care: How to Organize a Group
to Care for Someone who is Seriously Ill by
Cappy Capossela and Sheila Warnock (2004)
When Life Becomes Precious: The Essential
Guide for Patients, Loved Ones, and
Friends of those Facing Serious Illness
by Elise NeeDell Babcock (2002)
Supportive Cancer Care: The Complete
Guide for Patients and Families
by Ernest H. Rosenbaum, M.D. and
Isadora Rosenbaum (2001)
When the Parent Has Cancer: A Guide
to Caring for Your Children
by Wendy Harpham (2004)
Surviving Cancer Emotionally: Learning
How to Heal by Roger Granet (2001)
Where the Buffaloes Roam: Building a
Team for Life’s Challenges by Bob Stone and
Jenny Stone-Humphries (1993)
Survivor: Taking Control of Your Fight
Against Cancer by Laura Landro (2000)
You Can Conquer Cancer: Prevention
and Management by Ian Grawler (2005)
––––––––––––––––––––––––––––––––––––––––– 41 ––––––––––––––––––––––––––––––––––––––––
Reassurance,
Understanding,
and Support when
you need them
the most.
“Peer Support on Call”- a free
service offered by the National
Bone Marrow Transplant Link
Emotional support is available
through one-on-one
conversations with trained peer
support volunteers who are
bone marrow/stem cell
transplant (BMT) survivors,
caregivers and marrow
donors. Since they have
been through the BMT
experience themselves, they
understand the patient’s and
caregiver’s feelings and can
provide an empathetic point
of view. For BMT patients and
caregivers, peer support is
only a phone call away.
If you would like to request a
phone call from a peer
support volunteer, please call
our office at 800-LINK-BMT
(800-546-5268).
For additional nbmtLink
resources, visit our website at
www.nbmtlink.org
urce Guide for
Reso
Cell Transplant
m
e
St
Including Bone Marrow,
Peripheral Blood, and Cord Blood.
Friends
Helping Friends www.nbmtlink.org